Social Codes: Sharing Your Genes Online

The 23andMe app in action. Image: Ariel Zambelich

Genes are going mobile. In September, consumer genomics company 23andMe announced it was opening its API, the program that allows other applications to interact with its data, for the first time. Since then, the Google-backed company has received more than 200 applications from developers.

23andMe is staying mum on the developers’ names, but said there was interest in integrating genetic data with electronic health records for studies at major research centers and in building consumer-health applications focused on diet, nutrition and sleep. Developers are also interested in making genetic dating sites and in combining genomics with personal data-tracking devices, like Fitbit and Zeo.

For consumers, 23andMe’s open API could work like “an operating system for your genome, a way that you can authorize what happens with your genome online,” said Mike Polcari, the company’s director of engineering.

The apps made possible through 23andMe’s API, especially those in the consumer-health realm, could usher genetics into the mobile age. They would allow people to access and share their genes and discuss their phenotypes — how they’re feeling, what they’re seeing, smelling and tasting — anywhere, anytime, without having to be chained to a computer.

With that convenience in mind, 23andMe launched its own free mobile app in June, allowing users to participate in research, access their genetic data and email results to friends. For now, that’s the only way to share information through the app, but the company says it’s “looking at incorporating other social features in future updates.”

23andMe says personal genomics remains its core product, but its API announcement, in conjunction with their summer acquisition of CureTogether, a Yelp-like social network where people rate treatments for more than 500 conditions, puts the company in a good position to mainstream and monetize DNA-based online communities.

People can already share their genetic data through interfaces like public genome database openSNP, which has applied for 23andMe’s free early access program, or through mobile apps like DIYGenomics. But neither process is seamless: both require users to upload their information manually, which can be a hassle.

On the 23andMe website, several communities have a few hundred members and host ongoing discussions on varied health topics. Customers can share and compare genetic, health and ancestry data through their browsers, but as other social networks have learned, mobile interfaces are far more powerful. Most people sit in front of their computers for limited periods of time, but mobile devices seem almost omnipresent.

Cynthia Manley, a 23andMe user, said she participates in the company’s surveys, but hadn’t used any of the site’s existing social features. “I’m not sure I want to fill out my network that way,” said Manley, a social media strategist at Vanderbilt University Medical Center in Nashville.

Manley currently signs in about once a month, but says she would likely use the service more regularly through a mobile device. The addition of push notifications to 23andMe’s app might accelerate that shift in behavior.

“For people that are interested, it will become part of the informational exhibitionism” that’s so prevalent these days, said anthropologist Brenda Bradley of Yale University.

23andMe, which calls itself the first genetic social network on its blog, has about 150,000 customers. Though they won’t say how many new members sign up each month, the company claims they’ve seen an annual growth rate of 100 percent for the past few years.

Some customers, like biochemist and former Wired contributor Aaron Rowe, still “don’t see it as a place where people hang out regularly.” But as sequencing technology becomes cheaper and the API opens up, there will be more customers and more opportunities to spend time in 23andMe’s space.

23andMe has already added entertainment “labs,” like DNA Melody, which turns DNA to sound, and Neanderthal Ancestry, which calculates how much Neanderthal DNA a person has, to its website, and Foursquare-like badges to its mobile app.

If social network-savvy youth culture adopts personal genomics and genetics-based social networks, “it will just be assimilated. You will have a button under your relationship status … or a heat map with the alleles you carry,” said 23andMe user and geneticist Misha Angrist of the Institute for Genome Science and Policy at Duke University. “People will share that very casually.”

Manley, for example, worries that if she shares her genes now, scientists will later discover she’s a carrier for a mutation she might not want disclosed.

Others share her concern. “My fear is more about protecting the privacy of your future self. Maybe right now, you’re eager to share genetic information, but your 30-year-old self won’t want that out there,” said Bradley, the Yale anthropologist.

Polcari said he has no way of knowing how many 23andMe users will choose to make their data visible to third-party developers, but he expected it to be high, just like with phone apps. “We’re just getting started,” he said.

As it grows, 23andMe may face some of the same challenges Facebook and Twitter have tackled: How can data be monetized, and third-party access granted to developers, while protecting user privacy? How can customers be encouraged to share more?

The company has terms of service for developers with an indemnity clause stating that “to the maximum extent permitted by applicable law, [developers] agree to hold harmless and indemnify 23andMe … against any third party claim arising from … misuse of the APIs.”

And for consumers, when it comes to sharing, “the onus,” Polcari says, “is definitely on the individual.”